Looking Back – At the CFID’s Association

August 22, 2009

Posted by Cort Johnson

John Herd’s recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we’ve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the post’s tone was mild the post itself too often lapsed into a kind of seamy and mostly baseless conjecture we see too often.

Essentially the post asserted many of the CFID’s Association’s activities over the past few years derived not from an intention to benefit the patient community but were simply callow money grabs. It’s an idea that’s been passed around again and again in discussion groups. This is what it said

In turn fewer and fewer patients supported the CAA which showed dramatically in a huge decline in membership revenues.

Sustaining revenue is essential to any organization so the CAA sought a bold solution, namely that of becoming a subcontractor for the Centers for Disease Control and Prevention’s (CDC) CFS program. Many in the ME/CFS patient and medical sectors viewed such a move as a blatant conflict of interests. Holding such a position the CAA’s political advocacy became increasingly lethargic — it wasn’t going to bite the hand that was feeding it.

In time contracts run out and such was the case with the CAA’s CDC contracts. Though the CAA gave the impression of pulling away from the CDC, this may have been more of a preemptive PR move taken while it still could, before the contract expired. Such a PR move may have seemed good strategy to hopefully win back support from those the CAA would need as they reinvented themselves yet again, this time as a research funding and very possibly research network administrative organization. Such a direction would make sense.

This kind of discourse which consists of ugly intentions for just about any activity is not uncommon. In this kind of conversation no good deed goes unpunished; a national media campaign is cast in the light of a money grab to support a failing organization; an investigation into the CDC’s lagging productivity is done out of pique or is another type of money grab. Acting to wrestle resources out of a government agency becomes ‘enabling’ it. A recovery story is nothing more than a scam.

This post did not suggest all these but let’s take a look at what it did suggest. Was the CFID’s Association ability to compel the CDC to mount a Provider Education Program nothing more than a money grab? Or was it an honest attempt to get more recognition for this disease? A little digging suggests that the argument is based on misperceptions which are easy to clear up.

Misperception #1: The CFID’s Association of America Relies on its Membership To Pay Its Bills – The CFID’s Association gets money for its day to day operations from members who provide monthly contributions and from its major donors not from its membership dues. The thirty-five dollar membership essentially pays for the publication of four issues of the Chronicle every year. The 2007 Annual Report (the last available on the website) indicated that the membership dues provide 10% of the organizations operating budget. Donations, on the other, hand make up about 90% of its budget. This is nothing new; every year the CFIDS Association goes on a separate funding drive to pay for its daily operations.

The history of the organization suggests that it’s been doing fine financially. About the same time this it was purportedly about to tank financially it took on a major new and risky effort. First it hit up its donors for a Million Dollar Research Initiative. At the end of that campaign it hit them up again for it’s operating funds. Because it did the Research Initiative first it ran the risk of the well running dry when it launched itsoperating campaign. These are not the actions an organization that was on the ropes financially would take.

Misperception #2 – the CAA Could Have Taken on the CDC At Any Time But Chose Not: The CDC’s issues of fiscal mismanagement have not been ongoing. Prior to the period in question the CDC’s CFS research program, in fact, was on fiscal oversight. It was only after the oversight lapsed that the productivity of the program slowed and money started getting flushed down the toilet; i.e. the CFID’s Association was not reporting on the CDC’s fiscal issues not because it was enabling the CDC but because its fiscal problems had not occurred. The program was put on fiscal oversight to ensure that those kind of fiscal issues did not occur.

Misperception #3: The CFID’s Association of America Had Nothing to Lose and Everything to Gain by Attacking the CDC- The CAA ran two risks when it attacked the fiscal mismanagement in the CDC’s CFS research program; direct financial losses and, if John’s Herd’s thesis is correct, the threat of legal action.

The possibility of ‘retribution’ from the CDC was brought up by the CFSAC panel. Kim McCleary declined to comment on that and I couldn’t figure out what that meant. I suspected it was just talk.

But at the Reno Conference I found out that the CFID’s Association of America is still receiving payment for the services it provided for the CDC. If my understanding is correct the CAA provides the services (i.e. foots the bill) and then bills the CDC for them. (This is apparently why so much funding is classified as ‘restricted’ in their annual reports). This meant the CDC’s the ability to hold up or withhold funding from the CAA could potentially cause it a great deal of trouble and that’s apparently exactly what’s happened.

Once the CAA started their investigation the CDC apparently began to engage in an ugly pattern of petty requests, late payments and astonishingly snide (and amateurish) comments from CDC personnel. The fact that this happened in the midst of the worst economic downturn since the Great Depression of course, only exacerbated matters for the organization.

A ‘smarter’ organization would have waited until it had received all its payments from the CDC to take it on in the public arena. The CFID’s Association, however, had a objective that would not wait. With the CDC’s CFS research team undergoing it’s 10 year evaluation the CAA faced a once in a decade opportunity to institute major changes in a program they felt was failing badly and they took it despite the knowledge that doing so could expose them to ‘retribution’.

Misperception #4: The CFIDS Association of America Is Engaging in Some Sort of Fraudulent Activity: The idea that the CFIDS Association is paying for its operations by siphoning money out of the funds for the Media and Provider Campaigns does not hold water. For one it proposes that the CAA is engaging in fraudulent activities for which it could be held legally responsible. It would be a strange thing, if that was true, for the CAA to give the CDC an excuse to dig deeper into [B]its[/B] own records and possibly engage in legal action against it. In a sense the CFIDS Association’s rigorous attack on the CDC provides all the evidence one needs to conclude that it was not using CDC funds to run its operations.

What is the most logical conclusion to the CAA’s activities with the CDC? It’s the simplest one.

One: that the CAA spied an opportunity to get the CDC to pay for a nationwide media campaign on the behalf of ME/CFS patients and it acted on it. Two: that when the productivity of the CDC’s program declined and evidence of fiscal mismanagement occurred the CFID’s Association of America acted appropriately and brought it to our attention.

Misperception #5- The CAA’s Research direction is unclear. The post also suggested that we don’t which way the CAA is going to go with its research (presumably behavioral or physiological)

The question amongst ME/CFS doctors and patients alike is what are the CAA’s actual views about the illness, possible etiology and what direction will they attempt to take research in with their funding. That we will have to wait and see.

Perhaps if John would took a look at their past and present research projects he’d have a better idea of what the CAA thinks causes this disease. The CAA is funding studies

that will elucidate the gastrointestinal ‘microbiome’ in ME/CFS patients; this should enable them to help determine if Dr. De Meirleir’s assertions are correct

that are identifying high rates of lactate in the brains of ME/CFS patients suggesting mitochondrial problems are present

that are uncovering abberrant receptors that maybe informing patients brains that extensive muscle damage is present (when its not) triggering fatigue and other signals in the brain

determining whether endogenous retroviruses are active in this disease

why so many patients have trouble standing (postural tachycardia syndrome)

The CAA recently funded the Pacific Fatigue Lab’s work which indicates that many people with this disorder have a fundamental metabolic problem that keeps them from exercising.

A Central Question? – John is also concerned about what the CFIDS Association believes causes this disease is. Without directly saying so he’s clearly implying the CFIDS Association of America may believe there is a behavioral etiology to this disease. Why does he believe this? Neither their research projects nor their publications nor their public statements suggest they do. The leader of the CAA, Kim McCleary recently publicly stated that CBT is not a viable research pathway and the CDC to task for including it in their future studies. (Kim McCleary, is also married to a man whose mother has been one of our fiercest advocates. This woman stood up at the CDC review session and lambasted the CDC for their horribly ineffective approach to this disease.)

There are things you can take the CAA to task for; not being confrontational enough, for not engaging patients enough, perhaps for not employing the best strategies. These are the things we should be discussing. The CAA has a responsibility to conduct itself in the professional and effective manner but as John noted in a recent post patients also have a responsibility to be informed about the issues they are speaking and to speak in a constructive manner.

If both sides hold up their end of the bargain our possibilities of making a difference in this disease are enhanced greatly. If they don’t and one side surely didn’t in this case then it’ll be more of the same; tepid activity, poor patient support, federal bureaucrats in control of our agenda, and more years of stagnation. Let’s have a real discussion: a discussion of how we can come together to effect change.

One can think that the “proof is in the pudding.” What have they done for ME? It hurts to have been sick for a very long time and see no practical help in sight. To be pragmatic, if I went to any doctor with this, in most cases they would not have a clue. In the 25 years I have been sick with this, I don’t see a whole lot more to help me or someone newly diagnosed.

How many patients are privileged to have a Nancy Klimas or a Dan Peterson or a Charles Lapp in their backyard? I came from Midstate New York and there is nothing better than when I left to move south when forced into retirement in the 90s.

We now may see Fibromyalgia on questionnaires to enable a doctor to understand a patients litany of health issues, but have you EVER seen CFS much less ME . A good friend of mine has the misfortune of having Lyme and most likely CFS as well. I shudder to think what the rest of her life will be like. She has no $$$$ for a specialist.

When the effort to get the Canadian Case Definition put in place as a guide for doctors until the USA could get their act together came upon the scene, we thought now there’s something…. finally! That dissipated like everything else. For myself, there seems to be a glimmer of hope with the Whittemore Inst. But as I come upon the age of 70 and after struggling for 25 years with this, one is not apt to get too excited about anything.

I know Nancy is discouraged and certainly she has reason to be discouraged but if she really wants an answer to what they have done for ME/CFS one can certainly be given.

Physician recognition of this disease has increased greatly. I’ve talked to professionals who say that there’s been a large change in how this disease is viewed in the medical profession. Several of them stated this was partially due to the CDC (yes, the CDC) announcing a public stage in 2006 that chronic fatigue syndrome is a real and serious diseases. If you look at the chronic fatigue syndrome sections of medical organization websites you will find a disease mostly treated in a respectful manner.

Treatment, however, has not progressed. Unfortunately ME/CFS physicians are no panacea. I know people who’ve seen some of the physicians you’ve mentioned for decades and are still disabled. Even if you have Nancy Klimas living next door to you unfortunately it’s is no guarantee that she could get you significantly better and certainly no guarantee that she could get you well.

Positive EventsThe fact that things are still really bad doesn’t mean they haven’t got better in many instances. Almost invariably the CFIDS Association has played a role in the major positive events: the ruling on Social Security disability meant many people who were felt through the cracks don’t do so anymore, the media campaign DID bring a disease to the attention of many new people; the Physician Education Program is educating physicians about how to treat this disorder; the research program is elucidating fascinating aspects of this disease and has led to several NIH grants, the CAA may have failed in their bid to get Dr. Reeves removed but they did highlight numerous financial problems and the poor productivity of the program.

So while the effects of these activities have not filtered down to you it doesn’t mean that positive steps have not been made. Not supporting virtually the only organization that’s made positive steps in this disease because they haven’t made enough of them is not a recipe for success. Bitterness is is not a winning strategy.

The Void: I mean who else can you point to? Yes the Whittemore Peterson Institute is a fantastic achievement in the researchsome realm but who else? I look around and I don’t see much in the realm of actual achievements; there’s the New Jersey’s Patient Care Manual, the Disability Handbook put out by the Massachusetts organization, some medical scholarships produced by PANDORA……It’s clear that this is a very difficult disease to research and advocate for; 25 years after this disease became public there are only a few viable state organizations in the entire US. Only a few even try to work on the state level and they do so intermittently. We’re pretty much a disaster with regards to support on the state level. It’s very bleak.

The correct position with regards to the CFID’s Association of America is not to turn away from it but to critically engage with it; to confront it in areas where it has not been successful and to applaud it areas where it has. Above all – since it has made a positive difference in this disease and so few others can make that claim – I think it’s incumbent on us to take the long view and support it, no matter what our personal situation is.

Looking Back – At the CFID’s Association
by CORT on AUGUST 22, 2009
“There are things you can take the CAA to task for; not being confrontational enough, for not engaging patients enough, perhaps for not employing the best strategies. These are the things we should be discussing.”

Perhaps you should confront them on these issues. See how they respond. We’ve done it and found it mattered not in the slightest. There is nothing we can do about their failures and shortcomings. When we started out most of us supported them – even Tom and myself. Many of us have done this. Support, like respect, must be earned. They haven’t earned it.

I realize there are no alternatives. That is a problem – we have no real credible national orgs in this country. But this still does not make them what they’re not. Competition is good as they say and that has been completely lacking. But given how bad things are would be reason to overlook quite a lot and even that has not been able to sustain them in terms of patient support.

“The CAA has a responsibility to conduct itself in the professional and effective manner but as John noted in a recent post patients also have a responsibility to be informed about the issues they are speaking and to speak in a constructive manner.

Observations clearly support the “follow the money” assertion, as John said. People who have been involved over time have have seen it quite clearly. They will commend anything for which they receive money. If occasionally interests coincide, all well and good (a broken clock is right twice a day). But they have their own agenda. We will not change it.

The BBB charity report summed it up nicely. The CAA met all basic charity accountability standards except the one used to demonstrate effectiveness. They had a very highly paid lobbyist and even when federal funding was plentiful ours remained virtually flatlined or decreased, all during which time Kim was on the CFSCC.

Patients are for the most part well informed. You accuse John of having assumptions and speculation, but what you are citing as clearing up misconceptions is also based on your assumptions and speculation.

Previously you were putting down others as petty or foolish for quibbling or caring about what happened or who gets or deserves credit for various events (mainly exposing the CDC). Yet you clearly care a great deal — that the CAA gets credit, even when it is undeserved.

“If both sides hold up their end of the bargain our possibilities of making a difference in this disease are enhanced greatly. If they don’t and one side surely didn’t in this case then it’ll be more of the same; tepid activity, poor patient support, federal bureaucrats in control of our agenda, and more years of stagnation.”
“Let’s have a real discussion: a discussion of how we can come together to effect change.”

It is the CAA that has not held up their end of the bargain. They’ve had over 20 years.
If we expect the CAA to do any of this or even that we will somehow be able to change them and make them do it we will just have more of the same for the next 20 years.

Jill brings up some good points but with regards to the points of my post (once again) instead of debating it on the facts she simply restates her strongly held beliefs. My rather long refutation of the follow the money argument was simply my ‘speculation’. It my speculation was based on false premises Jill neglected to point them out. It didn’t bother her at all that John’s fundamental premise – that membership dues drive the organization – is completely wrong. This is a very common tact taken; if you can’t argue something on the facts they you simply restate your belief again and again. That’s what Jill has done again and again and again.

She also added more ugly elements into the mix. She said “They will command anything for which they receive money”. That’s not responsible or grounded in facts – its an ugly and unnecessary attack. Jill could very easily have said “They’re not spending money on the right things” and and then we could have had a discussion. Instead Jill, once again, leapt to the lowest common denominator. Are there aspects of that organization that could be more effective? Sure. Are their parts of the organization that should be applauded? Sure. That’s a discussion that’s almost impossible to have when you have to deal with statements like “they’re doing it for the money”.

I have to agree with Nancy Henson and John Herd – the situation really does seem bleak. I’ve been sick for 23 years and am in bad shape. I truly feel that despite advances in research, the practical situation is deteriorating. And, having followed Reeves’ antics for two decades, I believe there is cause for grave concern.
His publication record doesn’t match his rhetoric, despite the seeming progress of the 2006 press conference.

Regarding the CAA – as a rule, if I want to give information about CFS to a friend or relative, and want to use CAA materials, I usually dig up old CFIDS Association Chronicles from the 1990′s!! They may not have the very latest discoveries, but they were full of advocacy, hard facts about research, articles by experts, and listed the increasing number of documented brain/exercise/nervous system/endocrine abnormalities, media news, etc. They also didn’t hesitate to call out erroneous ideas such as those of Simon Wessely. They were IMPRESSIVE. The newer Chronicles just aren’t the same. Yes, I realize that the CAA now has a website and doesn’t need to put all this stuff in print – but I just revisited their site and found it somewhat lacking – I think “watered down” would be the way to put it, as if they want to please everyone (including the CDC) and not make waves. There’s no mention of the Canadian definition or problems with the CDC’s empirical definition that I can find (unless it’s buried under some sub-subheading somewhere). Good grief, you’d think that Reeves was Voldemort rather than just another government employee. (This goes for the CFSAC as well….they sometimes seem to be overly deferential to Reeves, as if they’re afraid of the Aveda Kedevra spell). You know….there are many parallels that could be made with Harry Potter’s situation (trying to convince the Ministry of Magic that Voldemort really WAS a threat), but that’s a subject for another time.

I’ve got a brochure from the National ME/FM Action Network (Canada) and it’s crammed full of facts, including a handy chart showing the serious effects of exercise on the body of a person with ME/CFS (decreased cerebral blood flow, etc). The CAA’s pamphlet “introducing CFS” is nicer and glossier, featuring a smiling healthy-looking woman on the front, but imparts less information (and concentrates on the CDC definition) – I’d call it “CFS Lite”. Sadly, I can’t really give the Canadian version to a doctor since it’s not accepted here, but I really prefer it.

Your point, Cort, that living near a CFS specialist is not a guarantee of recovery is correct, but it’s still much better than NOT living near one – you need to remember that even though doctors may have now heard about CFS and may believe that it’s some type of legitimate illness, they don’t really know much about it or how to treat it. The last time I told a primary care physician that I had elevated intracranial pressure, he was incredulous. Let’s face it, family doctors have no clues about things like mitochondrial dysfunction, hypoperfusion, and all that. I personally am helped by Klonopin; I am lucky enough to live near a specialist who understands how that helps my brain function and prescribes it for me, along with sleep meds like Sinequan, which I might not get from a doc who was ill informed concerning the particular sleep disturbances experienced by patients. Very few primary care physicians would prescribe benzodiazepines; in fact, we had quite a fight with insurance a while back because they just couldn’t believe that one of the medications was appropriate for some people with CFS. You really ARE better off living near a specialist – even if he/she can’t cure you, you can get the special supports and meds that you may need. I even have a nicely worded letter excusing me from jury duty due to physical and cognitive problems.

Anyway, the point of this rambling is that the CAA could have, and should be doing, a lot more to ramp up public and medical awareness and advocate for patients. This is a nasty illness with a bazillion documented physical abnormalities which readily explain the debilitating symptoms. But the general public STILL doesn’t know this. Maybe it’s time that somebody DID alarm the public. After all, there’s no cure and no way to prevent it (unless you go back in time and change your childhood, if you believe the CDC’s childhood trauma study). Also, the ad campaign from a few years ago was, in my opinion, inadequate. Friends who have seen the CAA/CDC joint effort (TV ad in particular) have largely commented that it didn’t really explain the illness, and gave the impression that the tired, sad-looking woman might be depressed (the “get help” line seemed to reinforce that).

I’m not sure I’ve expressed everything as well as possible; I’m feeling quite sick and feverish. But I really wanted to comment. Cort, I’m not sure how long you’ve been sick or when you started getting information on the CDC, NIH, and the politics of CFS, but I am not sure you quite have the “big picture” that some of us do. We’ve known since at least 1992 that Reeves was no friend of people with CFS, when he blasted the Tahoe study with a letter in the Annals of Internal medicine. On March 27, 1996 he was quoted on ABC’s Primetime Live as saying that “there is no viral cause for this problem, there are no immune system abnormalities in patients with CFS, and there are no clusters of this disease.” When asked about the illness cluster at Lake Tahoe, Dr. Reeves told the producer of the show that the event was a result of “hysteria”. To my knowledge, he’s never recanted (if he has, somebody please correct me).

Why would the CAA want to work with someone who holds these views? I don’t ascribe any sinister motives to the CAA, and I think Kimberly McCleary really does want to do the right thing, but I certainly don’t contribute money to them anymore. They simply dropped the ball for a number of years. There’s signs that they are picking it up again, but they need to hurry and make up for lost time. The shoddy publications being turned out by Reeves’ group are piling up, and you can bet that doctors give them credence. I’ll be happy to renew my support for the CAA once I’m sure they are headed in the right direction, and intend to stay there. Meanwhile, my hopes are with the Whittemore-Peterson institute. If they can get some good publications in good journals, and get more publicity, that will hopefully counteract the CDC misinformation.

Information Source: Marie, I agree with you at at least partially about the information that the CFIDS Association puts out. In fact I canceled my membership at one point because it was all such fluff. I think the information they put out now is much more comprehensive and informative. The E Link in particular always has some interesting and intriguing items. I do you think it could be quite a bit better though.

I agree with John as well when he said this:

As years went on and it became increasingly conservative and circumscribed in its political advocacy. It was alienating itself from its constituency.

Too Conservative: I believe that the CFIDS Association in the period that I have been engaged with it has been far too conservative. It has not, for instance, informed patients about the problems at the NIH. Nor has it been a good information source (until recently) about problems at the CDC. It has not established itself as a leader in the discussion about many of the political issues facing our community. If it was a hard-hitting on the ball ‘exciting’ organization at one time it’s really not any more. It doesn’t take chances in a lot of areas. I am very clear about these problems.

An organization that was really in tune with its patients would have initiated a discussion regarding the ‘ myalgic encephalomyelitis’ name; it would have focused on The Empirical Definition, it would’ve explored more in depth the new prevalence figures, it would have elucidated the CDC-UK connection as Mary suggested. Instead it’s become, a very professional kind of slick but not always informative place. it’s not leading the discussion! The membership declines indicate that they have lost the pulse of the patient community to some extent. Are they moving in the right direction? I think they are. Do they still have a long way to go? Yes they do!

These criticisms do not, however, displace the good things that they have done. It’s disappointing to me to hear again and again the media campaign described as a failure simply because not everybody saw it or because it wasn’t in every magazine or it wasn’t on prime time television. Those are unrealistic expectations – the fact is that chronic fatigue syndrome was advertised in national magazines and in media outlets across the nation for the first time ever – and that was a very positive thing.

Treatment - Of course it’s better to have more and more informed physicians. And a specialist should be able to least improve one’s health – always a godsend. I have seen at least one of our great figures though and he did nothing for me. Our treatment options are still far too limited. The situation, by the way, is not so different for fibromyalgia. Ken Friedman Ph.D lives in a major metropolitan area and he knows a lot of people and he’s still been unable to find a Dr. who could treat his daughters fibromyalgia. But of course – yes to your point!

Big Picture – Honestly I’m a bit tired of hearing that I don’t see the big picture because I haven’t been around long enough. I’ve been doing this for seven or eight years now. I’ve been going to the meetings. Unlike many advocates I actually read the research. My reading of the research leads me to have a more nuanced view, I believe, than most people of the activity of the different research groups. If Dr. Reeves ever described this disease as hysteria it’s certainly been a long time; if you read his comments you’ll see that he describes this disease is a neurological disorder and a mind-body disorder. You can take that as you will! The CDC’s research has been primarily focused on the stress response systems (HPA axis) – not psychology. Right now they’re focused on the effects of traumatic events on the stress response system. I agree that that focus is problematic. I don’t think the focus on the HPA axis is particularly fruitful. I cannot say, however, that it’s not reasonable. HPA axis studies usually have positive findings!

Viral Cause: With regard to the viral cause. Yes there is now some good evidence that a subset of patients have a big viral problem that appears to be tied to immune deficiencies. That is the group that Dr. Peterson is focused on. He believes it makes up about 25% of the population. It does not appear to be the problem for the rest of the population. This is clearly not a cut and dried issue! Dr. Montoya brought together a group of specially selected CFS patients with high viral loads and gave them antivirals and it didn’t work! Viruses do not appear to be the answer for many of us yet some patients simply cannot seem to tolerate research into other areas.

CAA – Good for you for showing a willingness to give the CFIDS Association another chance. I think I’ve shown that despite the deficiencies that that group has they are nevertheless doing valuable work. The research publications put out by them will help blunt the impact of the CDC. Their physician education program was produced because they were not satisfied with the CDC’s physician education program – so now we have a good physician education program that will blunt the CDC’s influence. The CAA called for the CDC to move the CFS program into a different department and to find new leadership for it. If you look you will actually find there is no group doing more to blunt the CDC’s program! I think you should give them another look.

For me I hope they continue to be more interactive and more confrontational and more willing to take a chance.

cort 08.23.09 at 11:35 am wrote:
“Jill brings up some good points but with regards to the points of my post (once again) instead of debating it on the facts she simply restates her strongly held beliefs. My rather long refutation of the follow the money argument was simply my ’speculation’. It my speculation was based on false premises Jill neglected to point them out.

“It didn’t bother her at all that John’s fundamental premise – that membership dues drive the organization – is completely wrong.”

I did not see that as his fundamental premise. Dues do not have to drive an org, but conversely membership is a good reflection as to how well they are serving their alleged constituency.

“This is a very common tact taken; if you can’t argue something on the facts they you simply restate your belief again and again. That’s what Jill has done again and again and again.”

Notice many people have stated the same beliefs and we have provided evidence. You are selling us a very different interpretation from what has been our experiences over a much longer period of time.

“She also added more ugly elements into the mix. She said “They will command anything for which they receive money”. That’s not responsible or grounded in facts – its an ugly and unnecessary attack.

No, it is what has appeared to be the truth. Sometimes the truth is ugly. This is a very common tact taken – label anything that is negative or not what you want to hear as an attack. We have stated reasons. Here’s a couple:

For example, #1. the most recent topic. No one can seem to say exactly what it is that made the CAA “see the light” with regard to the CDC. You have not been able to when asked repeatedly. People have noticed that it coincided with the expiration of the contract. That seems to be the most obvious common denominator. Hence the comment. They were no longer receiving money for this so could criticize it as this seemed PC at the moment.

#2 the name change. patients have desperately wanted a name change. CAA always claimed to be leading the name change movement. Kim was on the name change workgroup, saying that she supported it. Then they publish that branding CFS article in the Chronicle. Patients were shocked. Then we found out that the CAA got a CDC contract and this was the new strategy. They were paid to do this and sold us out.

“Jill could very easily have said “They’re not spending money on the right things” and and then we could have had a discussion.”

Sure I could have but this is a different subject.

“Instead Jill, once again, leapt to the lowest common denominator.”

In this instance it was the most obvious common denominator. The value judgement is yours.

“Are there aspects of that organization that could be more effective? Sure. Are their parts of the organization that should be applauded? Sure. That’s a discussion that’s almost impossible to have when you have to deal with statements like “they’re doing it for the money”.”

It’s impossible to have?? You’ve been having it for days. Parts to be applauded – not really. I think Nancy is correct. They’ve had 20 yrs, significant resources, paid staff and lobbyists, gov’t and media contacts. As you said, the CAA is doing just fine financially. We certainly are not. There has been no real progress.

In turn fewer and fewer patients supported the CAA which showed dramatically in a huge decline in membership revenues.
Sustaining revenue is essential to any organization so the CAA sought a bold solution, namely that of becoming a subcontractor for the Centers for Disease Control and Prevention’s (CDC) CFS program.

Why did the CAA attack the CDC? I already gave several good reasons! As I said Kim McCleary is at every CFSAC meeting. Dr. Reeves presents (or presented) the state of the CDC’s research at every CFSAC meeting. Money was being spent, time was passing, Dr. Reeves kept talking about the same projects. The program was not producing! Easy! No underhanded motivations needed!

I’m among those who have been alternately dismayed, pleased, disappointed, perplexed etc. by the CAA’s activity or lack thereof. I’m an off and on member – off, for the moment, but will probably re-up as I like the idea of offering seed money to scientists so they have some thing to sell the NIH. That’s something I can get behind.

I do think that we need a conservative advocacy organization that can speak the same language as the governmental agencies that are so essential to progress for us. What we also need, and have never had, is a grass roots organization that can hit the streets and make a scene. I don’t think that the CAA can or will do that. To use the example of AIDS activists, who really knew how to put an emerging illness on the map, it would be our equivalent of ACT UP, but with more tools. These days, we don’t even have to get out of bed to make a scene. The one thing we can’t do, though, is turn on each other and when I say “each other,” that includes the CAA. The CAA is not the enemy.

Yet another way to interpret the rift with the CDC is that the CAA tried to suck up to them, it didn’t work, and now they’re trying a different direction. We need to accept it, get past it, and try to focus on disrupting whatever it is that the CDC’s up to while making some inroads with the NIH. If the CAA can help, we need to embrace them and whatever they can do.

Grassroots: Thanks Nancy. I appreciated your comment. We do need a grassroots organization that can do that’s for sure. I’ve often thought of ACT UP.The CAA does not appear inclined to operate in that fashion. My question is if we are? In a conversation last year Dr. Peterson very bluntly said he didn’t understand why ME/CFS patients took so little interest in trying to advocating for their cause. He questioned why patients just let the government get away with things. He said at least he’d give it a try. This is a guy who’s devoted his career to this disease. I thought, well, he’s just upset because of way things have gone lately. But then I read an almost identical comment from him from him about 15 years earlier! This has been as you noted a very big problem for a long time. We have a lot going against us and not a lot of ammo to use. We could sure use that group. I guess one big problem is that collectively we’re in a lot worse shape physically than many of the AIDS patients (!).

Sucking Up or Acting Appropriately - My interpretation of events, of course, is that the CAA came out strongly against the CDC when it was appropriate. They played an integral role in the scandal in the late 1990s. They laid off them when they were doing all their interesting and innovative genomics work and then they (again I repeat they alone) uncovered the CDC’s problems of the last few years. Instead of sucking up to them they sacrificed some financial integrity when they hit the CDC while they were still owed alot of money. I like my interpretation. I think it fits well with the facts. I know there are others out there.

I am not a patient advocate (unless emailing one’s Congressional representatives and HHS counts), and this was the first time I’ve ever commented on a blog (it took me 3 hours to compose my previous message) – but I’ve read every research paper and/or research abstract I can get my hands or eyes on (since around 1988), and I’ve also read the minutes of all the CFSAC meetings (not an easy task), plus I’ve read the entire CDC CFS website (just not all at once!), plus various informative blogs, transcripts and/or summaries of meetings, IACFS conferences, etc (I am too sick to attend these events, but really admire the people who do!). Also, we have a genetics/molecular biology Ph.D in the family so I’ve got some “inside” insight on how scientific research should be conducted. I am not sure what you meant by the statement “unlike many advocates I actually read the research”. Are you implying that people like John Herd or Mary Schweitzer don’t? Are you stating a fact or an opinion? It sort of comes across as an insult, but I’m not sure to whom you are referring.

I am fairly confident that I’ve read most everything Reeves has to say on the subject of CFS, and I am capable of seeing nuances as well. However, some of his responses to the CFSAC committee are enough to make me gnash my teeth. My point about Dr. Reeves’ description of Tahoe as “hysteria” is, I think, an important one. Yes, some years have passed and he now says publicly that “CFS” is a real condition and isn’t psychological – but as far as I can tell, what he’s studying is NOT the same disease that spread throughout the country in ever-increasing numbers in the 1980′s. The Tahoe folks are still not included in his evolving definition of CFS, and clusters “don’t exist” – so that excludes the Lyndonville patients, Raleigh symphony patients, and a whole lot more, including me. I don’t think Reeves has really changed his tune; he’s softened his public stance to avoid really controversial statements, which is merely smart PR. The CAA should have been fighting him tooth and nail (in a professional manner, that is) rather than joining the CDC for the public service announcement campaign, which truly didn’t seem to have much impact (an Ohio paper actually criticized the CDC for spending money for ads about a condition that “isn’t that important”…..apparently they weren’t swayed by the campaign!)

My Ph.D. relative was positively astounded at the fact that the CDC limited itself to studying the HPA axis – it’s not that hard to study the entire genome and gene expression these days, and the CDC has an adequate budget for that. He commented (concerning one of their molecular-biology-related papers) that “it sounded like somebody gave them some money, told them to study CFS or else, and they just came up with crud” (this is paraphrased; his actual term was less kind than “crud”). This particular publication was AFTER they were told to replace the $13 million they “misappropriated”. I cannot know for sure what goes on in Dr. Reeves’ brain, but my experience, my common sense, and his publications tell me he still cannot be trusted – and the CAA should have picked up on this much sooner. Even now, the CDC’s website states that “the name (CFIDS) implies an understanding about the pathophysiology of CFS that does not currently exist.” (This can be read athttp://www.cdc.gov/cfs/cme/wb3151/chapter1/overview.html)
Shouldn’t the CFIDS Association be very aggressively challenging this?

Regarding viruses – yes, not everyone has a huge problem with reactivated viruses -I don’t either, but my disease started off with an unusual, severe flulike illness in August 1986. I think viral research needs further exploration, as is happening in Reno. When Reeves stated in 1996 that there were NO viral causes of CFS (as opposed to SOME viral causes), his group had only done ONE small study (1995, “Seroepidemiology of Chronic Fatigue Syndrome: a case-control study”) which used only 26 patients; likewise, his statement disavowing immune abnormalities was evidently based on a CDC study that was published in January 1997, “Immune Responses associated with Chronic Fatigue Syndrome”. And in THAT one the CDC was forced to admit that when subgrouped by onset and how patients felt on a particular day, there were “more pronounced differences” between cases and controls. (This info is based on a PubMed search I did on all Reeves’ peer-reviewed publications). What sort of science is this? Why weren’t these “more pronounced differences” studied? And where was the CAA?

I started subscribing to the CAA’s Chronicle almost from the beginning – they were a beacon of light in the pre-internet days. I think people who’ve followed them from the “early days” might have perhaps a more intense sense of loss or even betrayal than people who got involved later on. Also, the loss of the open-minded Dr. Gunn at the end of 1991 and the abrupt ascendancy of Dr. Reeves, one of his detractors, to his position at the helm of CFS research is something that rankles to this very day. I meant no disrespect when suggesting you might not get “the big picture” – obviously you know quite a bit, and since you travel in person to conferences, you have the advantage of meeting and talking with CFS-related researchers. Your efforts are MOST appreciated! Perhaps the wording should have been that you might not have the same “sense of history” or “perspective” or something like that. Most of the points you make are well-taken and agree with many. But I still think you’re being a bit too tough on John Herd. I understand where he’s coming from.

Good for you for reading the CFSAC minutes! They are long! I should probably back off on that ‘read the literature’ comment. John proposed in one blog that the NIH was not doing innovative research and that, as I remember, it had psychological agenda or something to that effect. It takes two minutes to go to CRISP and look at the studies to realize that NIH is doing very innovative research that does not have a psychological agenda. He had obviously not done that. I do question thoroughly and objectively the research is being viewed. Absolutely I do. I see things like that frequently from our advocates. (If you post a blog or statement on this situation I think you’re an advocate).

HPA Axis: The CDC was not limiting itself to studying the genes associated only with HPA axis as I remember. They looked at a broad swath of neuroendocrine genes in their major studies and then focused on a subset of HPA axis genes that the larger studies have highlighted in smaller follow-up studies. interestingly those studies were all successes; they continued to outline abnormalities in those genes. Whether are not it was important work it was pretty successful.

Viral/immune: I agree that the viral question needs more research. For a while though the research into viruses just about died. Why? Because it was going nowhere. With improved technology and some innovative researchers it’s picking up again – thankfully. The immune question is also very complicated. I’m not trying to defend Reeves! Except for NK cell dysfunction and a few other findings it’s been pretty hard to find consistent results. That’s one reason why the emphasis shifted to the neuroendocrine system. If you look at the pattern of ME/CFS research over the years you’ll see a heavy early emphasis on the immune system and pathogen’s, then the immune system/pathogen studies decline and there’s focus on HPA axis plus some other findings coming in (orthostatic intolerance, blood volume, etc.).

Some immune subjects such as natural killer cells have had consistent results again and again and the body of evidence is building. (The CDC to their discredit never once did a natural killer cell test in their studies. That’s unbelievable to me.) Sometimes I think people think this is a cut and dried issue but it’s really not; good minds can and do disagree on the importance of different factors in this disease – they disagree frequently.

Being Too Tough – I am being tough on John but only on certain points. I agree that CFIDS Association is not being as effective as it could be. I agree that it’s lost some of its spark; that it should be more proactive, more action oriented and more informative. I think their focus on strict professionalism and not making waves has really cost them in the patient community. It’s unfortunate that that’s not the conversation that John wanted to have. He want to have a conversation on whether the CAA sold themselves to the devil for money.

CAA - His idea that we don’t know which way their research program is going was unfair as well. You asked if I think John Herd reads the research? Well he sure didn’t bother to take a look at theirs. If you’re going to indirectly impugned their research priorities I think you should at least check out what they are first. I mean look at these accusations; he’s not saying that the CAA engaged in the wrong strategy -he’s saying they sold out patients for money! And the facts indicate he was absolutely wrong. No I don’t think I was too hard on him at all.

John is coming from deep disappointment at the CFIDS Association – that’s understood- but for me he’s injecting things in the conversation that don’t need to be there – and the things he’s introducing our particularly tainting. I think you should be very careful before you make accusations or pass rumors like that. They have a way of melting into our consciousness.The fact that his fundamental premise – that falling membership dues forced the organization to tie itself to the CDC – is easily proved wrong means that he didn’t even begin to do his due diligence!

With the I wasn’t there thing – it’s no big deal. I just hear it alot!

Why has the CAA and CDC given up on the idea of contagiousness/clusters of this disease. I have just begun rereading Oslers web to refresh myself my horrid memory of events back in the 80′s and 90′s. When I became ill it was exactly the same way it was for those at Incline. My whole family became ill with what apparently was Epstein Barre and we got chicken pox with it. My liver was inflammed also. I never had an MRI but I know my brain has been affected although I did not notice that in the first year of my illness so much. Just last week I found myself about to poor dog food into the dishwasher! I caught myself and new it was a CFS moment but it made me want to cry for a moment because it’s so embarasing what this disease does to my thinking at times.
In Oslers Web they talk of the punctate white lesions found of the MRI scans of Incline village sufferers.Where did that research go? I mean MS sufferers have lesions on MRI scans and that is not ignored by the medical world.
Why weren’t these things like clusters and contagions and punctate lesions followed up on by the CDC. Why does the CAA never seem to mention contagion or clustering any more. I believe it is because it does not go with the governments stance on the illness and there continued attempts to minimize the public health threat our illness presents.
I for one believe this disease or a subset of this disease has some contagious element to it and this should still be reported on by the CAA and CDC.
Unfortunately the CAA will not push the contagousness issue because to do that would upset the CDC and not agree with there education of the public on the illness. A perfect example of how the CAA does not fight for us because of it’s working relationship with the CDC. I believe what happened in Lyndonville, Incline Village and in my family was something contagious. It was clusters and needs to be mentioned in a truly comprehensive study of ME/CFS. But these issues have been swept aside by the CDC and the CAA has been nowhere on the issue of it.
For those of us involved in a cluster who believe or have seen the contagiousness we are again let down by an organization that claims to reprent our interests. If they are so interested infinding the truth about this illess they must educate and have it be part of any government education program that clustering does occur and there are epidemics. But nowhere is that ever seen or mentioned any more.
Cort I really have to suggest something Jill suggested to you in an eaarlier post. If you have contact with the CAA voice your compalints to them and see what good it does?

MRI’s Yes they did find white lesions in a percentage (not all) of ME/CFS patients at Incline Village. They also found them in a percentage of the healthy controls! The lesions did not occur in any one part of the brain. In some patients they were found in one part, in some patients and in some patients they were found at all. The fact that they occurred in different parts of the brain was a big problem; it suggested to the researchers that they weren’t looking at one disorder. The fact that this same type of lesions were found in a significant number of healthy controls made it unclear how important they were. If you think they weren’t followed up then read the literature; after Incline Village a number of MRI studies were done on chronic fatigue syndrome patients. Sometimes the lesions showed up and sometimes they didn’t. The picture was so unclear that eventually they stopped doing the studies. The same thing that happened with pathogens. You don’t get that side of the story from Hillary Johnson! Check out this paper that illustrates those facts – I think that you’ll be surprised:http://aboutmecfs.org/Ed/OriginalSin.aspx. This is why I said I don’t think many ‘advocates’ read the research!

Contagion – Later the advent of functional MRIs researchers began finding consistent findings. Now that pathogen tests are improving their finding more consistent results (in some patients) as well. Even in Incline Village a significant proportion of the patients did not have an infectious onset! You may be interested in the contagious nature of this disease but it’s hard to find a researcher that is, the IACFS/ME is not, none of the UK ME groups are. If you’re going to pick on somebody then you might as well pick on just about everybody. The contagious nature of this disease hasn’t warranted any serious research for two decades probably. Dr. Cheney has said he’s tired of trying to chase down pathogens and that he doesn’t do it anymore.

Virus - Nobody thinks there is a special virus associated with this disorder. The prevailing theory is that many opportunistic viruses take advantage of a hole in the immune system in conjunction with HPA axis and other abnormalities. It could very well be that communities are swept by enteroviruses that exploit holes in vulnerable peoples defenses – causing ME/CFS in some of them – but if you think ANYONE is doing any research on that – or theres any interest in doing that then you’re completely mistaken.

I don’t really understand how you can be monitoring the CDC as a patient advocate group and accepting money to support your organization at the same time. Talk about a conflict of interest. That never should have happened. If the CFids association wants more money they should just work on truly representing and advocating for the ME/CFS population and the CFIDS community may just comer back to them and with financial support. I know I would give and have given them money every year for the past 10-12 years if they listened and were not influenced so heavily by the governments stance on ME/CFS.
They do virtually nothing to advocate for children with this illness. Not one study in children and adolescents with the cdc or CAA. I got this when I was 17 and my brother was 13. You’d think by the was the CDC portrayes it and the CAA goes along with this that it is a 30 something woman’s disease. Well that’s a misportrayal the government advocates as they teach it cannot be contagious and does not occur in clusters. The CAA has been OK with this for years and it is totally false! This is the misinformation spread to doctors by the very organization that is suppost to be our advocates and protection. I feel like maybe you get most of your info about the CFIDS org. from the Cfids ORG. Cort. They do have a long history of going with the political winds and piggybacking on other peoples investigating and then taking action claiming it was there own.

Keith! The CFIDS Association of America DID NOT accept money from the CDC to run their organization; they accepted money to run a media campaign. Does nobody get this? Is this really so difficult? It seems crystal clear to me. The money was for a media campaign. The CAA used their own money to run their organization. It would have have been illegal for them to use funds from the media campaign to run their own business. It would have been insane for them to accuse the CDC of financial malfeasance at the same time they were ripping off the CDC. This is not difficult!

The studies, as I discussed earlier, show that this is predominantly an adult disease! With regards the CAA not caring about kids with this this disease I suggest you check out their website. You might be surprised.

The CAA should do everything they can to maximize their effectiveness; that includes interacting with agencies to get money or services out of them even if they don’t particularly like them. I think they’ve shown they can take on the CDC even when there are supposedly under their thumb. Perhaps you missed the events of the past year?

Cort if the money was just for a media campaign it makes no sense when you talk about the CAA standing up to the CDC lately in the face of not recieving payments from them. Didn’t you say that earlier? If the money was only for the media campaign then why would they care if they withheld payments. There not really being brave as you kind of paint them out to be then
I’m not a scientist my degree’s are actually in psychology but I do know what I see personally with my own eyes and what people tell me. Dr. cheney is not a virologist so the fact he gave up looking for a virus means little to me.
How can you say even in Incline Village most of the people did not have an infectios onset. A sudden onset accompanied by EBV infections is not a viral onset? Your sounding like Reeves himself on that one. Your reinventing history I believe.
Of course no researchers are researching it because no one could get any money for it and researchers probably know this by now. They tried to find a pathogen and could not. It does not mean it does not exist. Isn’t doctor Martin still looking though? How could you explain my own personal experience of sudden onset with an infection. I am adopted and I got CFS in 1987 along with the rest of my family who have totally different genes. What about the teachers in the lounge at Truckee. Did they all happen to be vulnerable people as you say? That would be quite a coincidence. This happened to a lot of people in the 80′s wether you or the government want to believe it or not. You need to brush up on the history of this illness.
You keep posting that so many advocates don’t read the research. I’m sorry if we don’t all have as much time and energy to read as much as you obviously you do. I commend you for doing so but the rest of us aren’t lapsing if we can’t keep up as well as you. I will continue to advocate even if I do not meet other people’s standards.
I would also think you would have the sensitivity as a person with CFS to not critizise other peolpe for talking gibberish! My god some days its all I can do to organize my thoughts. I’m a little sensitive about my lacking in the thought process area.
I also have seen/ met lots of adolescents with this disease so it could be possible studies are incorrect. Could it not? I would think children could not advocate for themselves like adults can or verbalize there symptoms very well. ALso studies done of prevelance by phone interview are never going to pick up many children I do not believe. My god when I was ill as a teenager the doctor accused me of taking steroids and that must be the reason I had an inflated liver.
Do you think a prevelance study would have picked me up or my brother who was just being told he was a school phobic because he could not go to school. Kids can’t fight that. They will never show up correctly on a prevelance study. I have worked in research and on research projects. I have created my ownd research studies and been published and understand research bias. Do you understand the idea of biased research? You can’t just read all the research and believe it all to be true. You do understand this don’t you?
Again you do a great job but I can’t agree with you on all your points. I guess I’m most confused by your statements supporting the CAA for standing up to the CDC in the face of losing payments . Then saying they do not use the payments to run there organization. So then they really didn’t need to worry about financial retribution from the CDC , right?

Media Campaign – the problem is that the CFIDS Association apparently lays out the money for the media campaign and then gets reimbursed later. That gives the CDC – the reimburser – the opportunity to ‘hit’ the CAA by withholding or taking longer than normal to pay for the services the CAA rendered. That’s apparently exactly what happened: the CDC started finding reasons not to pay the CAA after the CAA accused them of mismanaging their funds. That happened of course, during this terrible recession.

Media Campaign - The CAA uses their donations primarily to pay for the day-to-day running of their organization; their rent, salaries, travel, website, etc. They use the funds from the CDC to pay for another company to create the media campaign (as I remember) and to pay for the individuals that run it. When the media campaign ends (or has ended) they’ll stop paying for the airtime, for individual salaries that run the campaign – whatever. That’s fine.

John Herd is proposing, though, that the CAA is using the CDC money to pay for the salaries, etc. of people who work for the CFIDS Association but who have nothing to do with the media campaign. That’s the only thing that makes sense when he states that the CAA needed the media campaign to make up for the loss of revenue from their declining membership and when he implies that they would go under if they didn’t have it. It just doesn’t make sense. The CDC is paying the CFIDS Association to run a media campaign not a support organization for ME/CFS patients.
Dr. Cheney is trying to get his patients well; He’s been known as the Cadillac of CFS doctors because of all the tests he gives. He used to give them every pathogen test in the book – that didn’t seem to make a difference in his treatments so he stopped. So the fact that he stopped looking for them maybe should matter at least a little to you. Other doctors to look for them that’s for sure.

With regards Incline Village all I did was go back to the original papers and read them. I’m sure you’ve got a different message from other people. That’s one of the problems. Dr. Martin to my knowledge, unfortunately, has been discredited. I haven’t heard anything regarding him for several years.

Pathogens: Of course its possible that pathogens sweep through a community causing a contagious illness that later shows up as ME/CFS. I’m sure it happens and I know people that it’s happened to. But check this out; the Dubbo studies followed people who came down with one of two viral or one bacterial infection. Ten percent of them came down with ME/CFS. When they looked for the pathogen in those people they could not find it; the pathogen had been vanquished!

So what happened? They did find an unusual spike in cytokine production early in the disease and they speculate that this was the initial trigger of the disease – not the pathogen per se. They aren’t the only ones looking at cytokines; the Whittemore Peterson Institute is very interested in them, so is Dr. Maes, so is the CDC. So the pathogen itself may not matter; in fact I would think most researchers think it’s relatively irrelevant. That doesn’t mean that hitting the pathogens once they are present isn’t important. There are pathogens present in a subset of patients – but they’re usually opportunistic pathogens that we all carry in our bodies; there must be something that’s allowing those opportunistic pathogens to flourish. It’s certainly a complicated situation!

Bad Comment: I apologize for the gibberish comment. If you’ll notice I took it out about an hour. It is difficult I believe to get accurate information on this disorder. I see the same stuff repeated again and again and again. There are times when I read the literature when I wonder if we’ve read the same thing. It’s very frustrating on my part. It’s a difficult problem; most people do not have the energy to read this stuff. I’m lucky that I do and that I find it interesting.

Honestly it makes me see red to see the CFIDS Association (whatever its faults) portrayed as some money grabbing organization that doesn’t care about ME/CFS patients!

I do understand about research bias. I think the CDC’s random sampling scheme has a huge bias that basically doomed their study process. I have blog coming out on that in the near future. I apologize for the gibberish comment – it was out of line.

Cort
Apology accepted on the Gibberish comment. I do my best to convey my thoughts. Some days they come out more coherent than other days. I want to try to stay engaged in these discussions because I’m learning a lot from them and I’m trying to get reengaged as an advocate and supporter of others with this illness. I tried my best at it in thelate 80′s and 90′s but ran out of gas at the end of the 90′s and became too frustrated and had to save my energy for other areas of my life.
I’m sure some facts I don’t have right and some facts I miss but I do have a wealth of information in my head and I try to stay open minded and honest.
I do not believe the CAA is in it for the money or just led by money. I did not understand how the media campaign payment worked but did not suspect misuse of funds by the CAA. I do feel betrayed by them in many ways I have conveyed on this sight but I believe them to be on the up and upwith how they use there money. I do not like the way they operate politcally and if I was to support them now it would be to earmark money for there research program which seems quite good.
I totally agree with you on the random sampling. They miss so much with that. I look forward to reading your comments on it as I have huge problems with it myself.
It seems you feel the CAA is still worth supporting. Maybe you are right. But also if the CAA did not exist anymore don’t you think it’s possible another organization might be created to fill the void which was grassroots and patient based. An organization that listens to its members and follows its suggestions. I think it’s possible if the CAA were not there that just might happen.
You advocate for engagement with them and constructive criticism. But if you had been experiencing that fail for a long period of time to no avail would you not be ready for something new to support.
I feel like the CAA is like a car you’ve had for many years. You keep trying to fix the parts and it keeps breaking down. Then one day you realize you just have to bite the bullet and buy a new car because to try to fix the old one just isn’t worth the investment any more. That’s how I feel about the CAA.
If you or anyone else ever tries to start something new up I am game. I am partially recovered and do have some energy to give as long as I budget my energy right.
I still hold on to the possibility that a pathogen of some kind has something to do with this illness only because of my brothers and I’s experience with my being adopted and our illness’sstarting with a sudden infection. Interestingly his illness has been significantly more disabiling while I have had some recovery. Also speaking to the recent cancer conection my mom and sister have both developed some rare cancers. My personal experience with this illness has formed alot of beliefs and feelings about it. Probably even more so than what I have read I do admit.
I have to say the recent study on child abuse and CFS really has me furios too. DId they even determine if these findings are true of other illnesses or are they trying to say it is unique to ME/CFS. I’m sure most peoplethat have been abused are going to have more illnesses but it does not mean that it is unique to our illness. I wish they would pursue other avenues of research with the limited money the CDC has rather than a study like that one.
I still feel a lot stronger about the pathogen issue then most people.I know the research hasn’t born it out that there is a disinct pathogen causing CFS. It just seems from the clinical observation that there have been clusters where people have been unrelated and in close contact where many people have come down with CFS with Mono or Flu like symptoms in the beginning. Genetic susceptabilty just doesn’t allway seem to be a satisfactory explanation in some of these clusters where unrelated people are sharing a living or social space.

Advocacy - I think one problem with regards to staying engaged in advocacy is that there really hasn’t been that much to get engaged in! Despite all our problems and the many issues facing us there haven’t been that many opportunities to do much. It’s kind of puzzling. It’s hard to get anything done on the federal level. My brother is a lobbyist for a textile organization – which has a lot more clout than the CFIDS Association – and he is beyond frustrated at how difficult it is to get anything done on the Hill. First you have to get Congressman and Senators – who are deluged with requests of all kinds – interested. The CAA does have some politicians on their side but they still don’t have much clout. At the last Lobby day we were lobbying on the same day as the multiple sclerosis group. They were everywhere! We were like peas in an ocean of MS advocates. They got in to see the Senators. We got in to see their staffers.

It’s tough for an organization with so few members to command a lot of influence up there. On the other hand if you can get something done it can have a huge impact. I think that’s why Kim McCleary – in contrast to Mark Iversen – keep up the federal emphasis. It certainly helped them with the latest CDC fiasco. But still – I know I’m rambling – there just aren’t that many opportunities for people to take action and I think that’s a real problem. if you are

I do think the CAA is worth supporting; particularly when I look at the last few years with the research initiative, Suzanne Vernon’s hiring, the Medscape physician education program, the uncovering of the problems at the CDC, even the Facebook site which I really like – yes I see a more dynamic organization then we’ve seen in the past.

Pathogens are still an important research area. Dr. Chia of course found high rates of enteroviral infection in the guts of ME/CFS patients; Dr. Maes and De Meirleir have found high rates of bacterial overgrowth; we just had somebody in the new forums (forums.aboutmecfs.org) who saw Dr. Peterson report that Dr. Peterson stated that he finds evidence of dozens of viruses in each patient of that subgroup he’s focusing on. The problem is that there’s just not one or two – there are dozens – so there’s no antiviral he can use – so he uses immune modulators such as Ampligen. Mike Dessin’s believes that central nervous system enteroviruses are the key here but he also uses immune enhancing drugs rather than antivirals. (Interestingly one of the CFIDS Association funded projects that actually got funded by the NIH was on HERV’s – endogenous retroviruses that may have escaped from our DNA).

CDC – I agree about the CDC’s present focus. I think sexual abuse is really just a sideline – the focus is on stress and cortisol – and the theory that some traumatic event dysregulates the stress response system causing ME/CFS. The CDC will soon start a study looking for evidence of other traumatic events in patients childhood (eg infections, injuries) to see if there is an increased incidence of them. Besides introducing another terribly stigmatizing element into the mix I just don’t get it about the cortisol connection. Cortisol is only mildly low in this disorder! If they believe cortisol is central they should focus on showing how low cortisol could have such a devastating effect in this disease. Cortisol seems like a very weak card to play to me.

Cort you wrote: An organization that was really in tune with its patients would have initiated a discussion regarding the ‘myalgic encephalomyelitis’ name; it would have focused on The Empirical Definition, it would’ve explored more in depth the new prevalence figures, it would have elucidated the CDC-UK connection as Mary suggested. Instead it’s become, a very professional kind of slick but not always informative place. it’s not leading the discussion! The membership declines indicate that they have lost the pulse of the patient community to some extent. Are they moving in the right direction? I think they are. Do they still have a long way to go? Yes they do!

Its not just the ‘myalgic encephalomyelitis’ name which is the correct medical terminology for the cluster outbreaks of M.E. that the CDC covered up with its CFS creation, its all the other diseases hidden by this demeaning label. On your previous blog ‘Headhunter on the Prowl’ Meghan Shannon and Paula Carnes both spoke of other distinct diseases such as Post-Polio Syndrome and Chronic Lyme Disease which have also been misdiagnosed under the umbrella term CFS. Add to this all the misdiagnosed endocrine conditions, depressive conditions and serious misdiagnoses such as Cancer and you cannot ignore the damage this is doing to all of us. CAA and CDC are not moving in the right direction, they are still promoting CFS and broader definitions and inflated prevalence figures. The WPI is moving in the right direction by identifying the different diseases hidden by CFS, but the CAA is stuck in the past, it cannot see that CFS has been exposed and needs to go.

If the CAA wants to move forward it must stop playing the CDC’s CFS game and the damage it is doing. If it wants to be a relevant force in the future it should be rethinking what is happening now with the WPI, with Chia and Kerr and others identifying the different diseases so that research can finally be conducted on homogenous groups of patients. I have reconsidered what I suggested on the previous blog, it should consider Tom Hennessy’s idea for Chronic Immunological and Neurological Diseases, it should rename and reframe the organization to include all patient groups being damaged by the unscientific CFS label, unite these groups of patients and focus on one thing only, lobbying the CDC and NIH to get all these diseases on the medical curriculum and CME courses, and get the crooked psychiatrists out! That’s the Big Picture.

CFS awareness campaigns and CFS CME provider education courses and CDC ‘tool’kits are damaging not informing, all they do is confuse people with various fatiguing conditions that they too have had CFS and recovered which feeds into the hands of the Wessely School inspired psychiatrists, and most damaging is that they are confusing doctors who have no training or guidelines to distinguish between ME, PPS, Lyme, GWS or MCS, or to investigate post viral syndromes or other fatiguing states and treat accordingly. It has gone beyond CFS meaning the same as M.E. in other parts of the world, CFS now covers a range of misdiagnosed serious diseases and its time the CDC was called to account for the deliberate medical neglect of misdiagnosed neuro-immune diseases destroying millions of lives.

The CAA still wants to play CFS games with the CDC so it has chosen its own demise and there needs to be a different focus to redeem our collective futures. Patients should give their money to the WPI instead to help them get this mess sorted out and seek a coalition of grassroots patient organizations representing all the neuro-immune diseases who would have the combined power to unite the neuro-immune patient community and take on the CDC and NIH. What do other patients/carers think?

John you are a big picture guy! The CAA has refrained from commenting on the appropriateness of different research approaches. In some sense this has been warranted; its really been hard to tell just what’s going on in this disease – something your post with its mention of all the different possible subsets – elucidates pretty clearly. Even their name – CFID’s – chronic fatigue immune dysfunction – while popular with the patients has not really worked out; its clearly immune and but it also appears to beneuroendocrine and what about vascular and metabolic? The Pacific Fatigue Lab results suggest metabolic dysfunction in some patients! I don’t really fault the CAA for not getting behind a specific area of research.

What has hurt them, though, is their unwillingness to comment on broad research themes; behavioral therapy, the need for subsets, the definition, etc.. These are central issues in the fact that the CFIDS Association is not taken a stand on them leaves people confused and upset. They should be leading the discussion on these issues – not hovering in the background.

I think they are changing though and Suzanne Vernon’s presence has probably helped. She’s quite dynamic and she gives them the research kudo’s they need to be able to comment on research matters and be taken seriously. I have the feeling that you’re going to see them take strong stands on the definition and the need for more behavioral studies and the research direction that the CDC is taken. (In fact they already have).

As for uncovering all those subsets – that’s is a big task – something the CDC should’ve taken on ( particularly after introducing the empirical definition). The CAA should push for more subset studies (and they did recently). You might ask if any of the other big support organizations are doing what you ask – of course they’re not; everyone is tied to the research definition until a better one becomes accepted. Until we actually have replicated studies that prove specific subsets are there I think their hands are tied with regards the physician education programs. As soon if they’re proven I’m sure they’ll be in there; the CAA’s program was written by prominent ME/CFS physicians.

As someone who has donated consistently to the CFIDS Association since 1995 I’d say this much: The Association has clearly lost “connectivity” with most CFIDS patients. The amounts raised from membership dues have been systematically declining for 10 years or so. This is unfortunate because the pool of donors that provide the bulk of funding for the Association are likely to be folks that are either members or relatives of members. So with a declining membership, the donor community is unlikely to grow very much.

Overall I have gotten m0re frustrated over the years with a lack of candor coming from the organization – while the NIH extramural CFIDS funding amounts were stagnant all I heard was a lot of happy talk about how much progress we were making on the advocacy front. An organization which is unwilling to openly state goals / metrics and measure progress on a yearly basis does not inspire much confidence. For this reason I now earmark my contributions solely for research.

I often wonder what we might achieve as a community if each CFIDS patient personally donated 10% of the money they spent trying to get better to medical research. A trusted national organization with an inspirational leader might raise considerable sums for medical research that would benefit all of us in the long term. If we are not willing to help ourselves, why should expect our government to make much of an effort?

So I’d ask all the readers of this post – would you be personally willing to donate 10% of your medical budget to CFIDS research assuming there was an organization that you trusted to manage the grant process?

Overall I have gotten m0re frustrated over the years with a lack of candor coming from the organization – while the NIH extramural CFIDS funding amounts were stagnant all I heard was a lot of happy talk about how much progress we were making on the advocacy front.

resonated for me. While the CAA presents alot of information on a lot of areas they’ve really shied away from the negative stuff. (It’s no wonder they have so much trouble getting alot of people to their Lobby Days.) I believe the ME/CFS community needs to know more about the funding situation. I think they know – without the facts in front of them – that the research situation is pretty appalling but you wouldn’t really know that from the CAA. I think there is an attempt to focus on the good stuff and push the bad stuff to the side – and that can be unsettling.

Just think if ten percent of the people diagnosed with this disorder (about 20,000) sent $10 a month for research funding. If I have my numbers correct that’s over $2 million a year. Twenty percent would be over $4 million dollars in targeted, creative research. The Whittemore Peterson Institute’s budget is $1 million a year! What a difference your plans could make!

Yes a small sum of money from a large enough group of people can make a very large difference. To me it seems eminently rational that folks who spend hundreds of dollars a month on suppliments should be able to donate $10 a month or more to medical research. But clearly this is not happening on a large enough scale. I don’t know exactly why – I’d imagine some folks don’t trust the existing CFIDS organizations with their money. I wonder what most patients think is going to save them (or future patients) in the end – medical research or a whole bunch of people trying all sorts of random things with no systematic tracking of the results or communication among the experimenters?

Perhaps the truth of the matter is that the benefits of medical research seem far away and impersonal to most patients as compared to their efforts at getting well. If we cannot act rationally in our own self interest in terms of funding medical research then I wonder how successful we can ultimately be on the advocacy front.

Sorry Cort. But I am also very dismayed by CAA and its lack of any real activities in the last years. They WERE good and put out some really well done studies. But things have changed for the worse and I no longer support them. And the mixed saying of “the friend of my enemy is also my enemy” holds true for the CAA connection to the CDC (those evil devils). Regardless of what the CAA is taking money from the CDC for it just doesn’t matter – they are still in bed with each other.
My small charity money is now going to the Whittemore-Peterson Institute. THEY have made huge strides in just one year and I expect THEY will be the ones to really lead on CFIDS research in the US.

The Whittemore Peterson Institute is a great place for your money! But, but he sputters….have you read any of the blogs on the CDC’s travails over the last year? It was the CAA that exposed the fiscal mismanagement – not anyone else. It was Kim McCleary that stood up at the CFSAC meeting almost a year ago and called for Dr. Reeves to go because of that. Dr. Reeves has accused the CAA event information smear campaign against him. Kim McCleary can hardly mention Dr. Reeves name without sputtering she’s so upset. I assure you that those two organizations are not ‘in bed’ with each! Hopefully we can get over that notion and move onto other discussions about the CAA.

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